living with lupus, day by day, moment by moment

“All magic comes with a price.” -Rumpelstiltskin

Without medicine, I would most likely be dead. To a lupie like me, lifesaving drugs are like magic. But like magic, taking these drugs comes with a heavy price of suffering its many side effects.

There are so many things wrong with me on any given day that a meeting with my doctor sometimes seems like a big negotiation session. With every sympton I describe- and there are many -there is a medicine for it. Of course, I would gladly take 50 pills a day not to feel all my pain but each pill comes with its own list of side effects. Choosing a medicine regiment is like entering a relationship with a potentially good person but with a lot of issues.

Over time, a number of medicine have been prescribed to me, many of which I have not taken, such as – omeprazole, valtrex, meloxicam, ondansetron, nexium, percoset, zyprexa, tramadol – all dealing with a particular symptom (e.g., joint pain) or with a side effect (e.g., nausea).  I am trying to take only what I consider to be “life saving” pills.  Basically, drugs that tend to cure, not mask my symptoms. These include an immunosuppressant, a steroid, an anti-malarial and a heart medicine. It’s the barebone my doctor is allowing me to take.  But even with these limited number of medications, I suffer multitude of side effects such as nausea, fever, vomiting, heartburn, dizziness, etc.  Not to mention that by taking these heavy hitters, I am at high risk for other longterm side effects, such as cancer.

Over the years, I have also added non-life-saving drugs such as cymbalta and gabapentin to help me with my neuropathy and fibromyalgia muscle pain.  I resisted as long as I could but had to try something for all the pain.  Unfortunately, it really isn’t doing much.

Being dependent on pills is very frightening. I got my first real scare when Storm Sandy hit and there was a danger that I would not be able to get my needed refills in time.  More than water or food, my first thoughts regarding survival was my pills. I knew I would not last very long without them.

I dream of a day when I will be drug free, or at least, mostly drug free.  But considering the drop in mortality rate among lupies taking these meds, I am glad I have the option to take them, even with its often heavy price.

My Box of Essentials

                                                                      My Box of Essentials

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